1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
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Another Contest Vivant - to WIN Reseach Money!!

Discussion in 'Action Alerts and Advocacy' started by SpecialK82, May 19, 2011.

  1. Sasha

    Sasha Fine, thank you

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    Finally posted on the Llewellyn King article after about 30 goes. No idea what the problem was!
  2. Boule de feu

    Boule de feu Senior Member

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  3. Boule de feu

    Boule de feu Senior Member

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    My vote for today: Rocky Mountain or IACFS/ME?

    Let me know. ;-)
  4. Dolphin

    Dolphin Senior Member

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    Either would be good, IMO.
  5. Boule de feu

    Boule de feu Senior Member

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    Originally Posted by Dolphin
    "Either would be good, IMO."

    Do we try to secure the IACFS or we try to "push up" the Rocky Mountain? Is it still feasible at this point?
    If not, I would like to give my vote to IACFS.
  6. Dolphin

    Dolphin Senior Member

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    I'm not sure where the Rocky Mountain voters have gone - they went up 2 votes, 2 days ago and 6 votes the next day. I'd like to see evidence that the organisation was pushing it. Although saying that, I don't think the IACFS/ME are pushing it either.
  7. Sasha

    Sasha Fine, thank you

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    IACFS is in 20th place and 50 votes ahead of the charity in 21st place.

    Rocky is in 24th place and 35 votes behind the charity in 20th place.

    8 days of voting to go... bit of a difficult call. Personally I'm more of a bird in the hand girl so I'm voting IACFS for now. Also, I think IACFS as a charity has more impact for PWC nationally and internationally but that's just my view - I'm not well informed on US charities, I've just admired the IACFS meetings which seem worth supporting.

    So maybe it's a decision based on your personal bird/bush profile and preference between charities. Dunno!
  8. cfs info

    cfs info

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    I'm voting IACFSME. It has moved up quickly but it's teetering between 19 and 20. It needs regular daily votes to at least maintain it. I'd feel better if it was up to 16 or 17 before pushing for Rocky Mountain. Also from correspondence I've had with Vivint, there is a possiblity of a 24 lag in updates to the site. I've noticed up to 20 minutes delay. Their official position is updates can take 24 hours. Even more reason to have a good buffer for IACFSME.
  9. Sasha

    Sasha Fine, thank you

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    Yikes! That's worth knowing.
  10. insearchof

    insearchof Senior Member

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    For all of you working so hard on this competition,:thumbsup: could I ask you to spend a little time putting together a short submission to the APA on the DSM 5 proposed psychiatric diagnostic reforms.

    If they go through - its not going to be a happy state of affairs for persons with ME CFS FMS or XMRV :(

    They will directly affect all Americans - but as the DSMs are used to varying degrees outside the USA they will impact us all. And as we know, other parts of the world look to developments taking place in the USA.



    We need submissions! :Sign Help:


    The deadline is 15th June 2011:eek:


    I have set out an overview of the topic and a brief list of issues/concerns/arugments that could be used.

    Please See this thread here: http://forums.phoenixrising.me/showthread.php?12201-DSM-IV-proposed-reforms-for-DSM-5-URGENT-Submissions-needed-NOW.-Help-is-here!


    :thumbsup:
  11. SpecialK82

    SpecialK82 Senior Member

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    Hi Boule de feu, thanks for the link. Do you know if they know that they are in this race? It would be great if we had alot of support for this charity and we could win 2 regions.

    I am endorsing IACFS/ME because I think my vote can make the most difference there right now since it's teetering on the edge.

    As far as being able to Win some money, I think National ME/FM Action Network has an excellent chance because the competition doesn't look too tough. WPI has a great chance also of course, but I think the Pacific region competition is laying back some until the voting starts.
  12. SpecialK82

    SpecialK82 Senior Member

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    I have an idea but I'm too tired to chase it right now. What if we ask every organization that we are endorsing, what they would do with the $100,000 (or $250,000)? Maybe then we would have a much clearer choice between some of these organizations and we could let them know that the answer will be public on this forum.

    We could start a new thread with the answers.
  13. Dolphin

    Dolphin Senior Member

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    I'm a bit concerned about splitting the vote too much. To me, in Round 2 the choice should be between the National ME/FM Action Network (and maybe Nightingale) and the WPI. Based on CCG, we know that the WPI have a lot of fans but then Canada seems like it might not be too hard to win. I think votes for others outside Canada and the WPI will be a waste as I can't see others winning their region e.g. Utah Prader-Willi Syndrome Association
    UT 8566 already in mountain (The Rocky Mountain CFS/ME & FM Association) and in central ( IACFS/ME International Association for Chronic Fatigue) there are 2 over 6000.

    So I'd prefer if only those were asked. Just my humble opinion.

    ETA: if The Rocky Mountain CFS/ME & FM Association don't make it, and presuming none make it in Eastern, I suppose it wouldn't be the end of the world to be thorough and include ask all 4.
  14. Dolphin

    Dolphin Senior Member

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    I'm just looking at my saved figures: Be Perfect Foundation, in Pacific, went up 471 in around 23 hours or around 500 a day. They look to be doing something similar today. Looks like they'll be tough opponents.
  15. Sasha

    Sasha Fine, thank you

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    Scarey. We really, really have to have people ready to pile in from Day 1 once the second round starts on June 14th.
  16. Boule de feu

    Boule de feu Senior Member

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    I think they do since they are discussing strategies on Facebook.
  17. SpecialK82

    SpecialK82 Senior Member

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    I'm intrigued to see how this will fall out Day 1. We may not be seeing much action in Canada right now because everyone is safe for Round 2 and not worried.
  18. Dolphin

    Dolphin Senior Member

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    Maybe. But with regard to Prader-Willi in Utah they seem to not to be doing anything tactical - 8619 is clearly plenty but they've just kept going so Prader-Willi in Canada may be similar. With a lot of the ones in Canada, the numbers are very small: second is 1093 and third is 520. After that, 4th is 224 and 9th is only 96. 224 is not many votes - it's a maximum of 224 individuals but probably a lot less. If I was associated with a cause that only had one entry in the whole competition, I'd keep voting until at least there were several hundred votes given the scores in other regions. Some may plan to try to get new voters after Round 2 starts but that's a waste as they don't have them from the start. Because Canadian charities weren't eligible for any of the Chase Community Giving contests, they and their voters may not be used to voting. Who knows - just thinking aloud.
  19. cfs info

    cfs info

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    I can confirm they know they are in the race.
  20. Dolphin

    Dolphin Senior Member

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